Parents, government clash over autistic son's care

Nate Tseglin in a hospital bed on Oct. 2. COURTESY OF THE TSEGLIN FAMILY

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Nate Tseglin in a hospital bed on Oct. 2. COURTESY OF THE TSEGLIN FAMILY

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Nate Tseglin of Irvine in restraints for a recent court appearance. COURTESY OF THE TSEGLIN FAMILY

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Nate Tseglin as a teenager. His condition has worsened through the years. COURTESY OF THE TSEGLIN FAMILY

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Heather Williamson, a Project Independence volunteer, loads food to be delivered by Meals on Wheels into the back of a car at the Costa Mesa Senior Center. Project Independence works with people with developmental disabilities as they give back to the community. STEVEN GEORGES, FOR THE REGISTER

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Amber Lara, job coach for Project Independence, helps to coordinate the volunteers (behind her) as they pack Meals on Wheels food for delivery at the Costa Mesa Senior Center. Project Independence works with people with developmental disabilities as they give back to the community. STEVEN GEORGES, FOR THE REGISTER

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Ray Reymundo of Costa Mesa, a Project Independence volunteer, works to pack Meals on Wheels food for delivery at the Costa Mesa Senior Center. Project Independence works with people with developmental disabilities as they give back to the community. STEVEN GEORGES, FOR THE REGISTER

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Ronald Freedman talks about living with developmental disabilities in his apartment at Harbor Village in Costa Mesa. STEVEN GEORGES, FOR THE REGISTER

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Photos of Ronald Freedman's family fill a table in his apartment in Costa Mesa. STEVEN GEORGES, FOR THE REGISTER

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Ronald Freedman shows his hands as he talks about living with developmental disabilities in his apartment at Harbor Village in Costa Mesa. Project Independence helps provide support for him so he can live there independently. STEVEN GEORGES, FOR THE REGISTER

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Ronald Freedman shows off photos of his family that he keeps in his apartment at Harbor Village in Costa Mesa. Project Independence helps him live independently. STEVEN GEORGES, FOR THE REGISTER

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Ronald Freedman, left, stands in front of his apartment at Harbor Village in Costa Mesa where he has lived for the last 30 years with the support of Project Independence. Debbie Marsteller, executive director of Project Independence, comes by to visit. STEVEN GEORGES, FOR THE REGISTER

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Ilya Tseglin, father of Nate Tseglin. THOMAS MARTINEZ, THE ORANGE COUNTY REGISTER

Nate Tseglin in a hospital bed on Oct. 2. COURTESY OF THE TSEGLIN FAMILY

O.C. DEPENDENT ADULTS

The Regional Center of Orange County is one of 21 nonprofit centers that serve those with developmental disabilities, including intellectual disabilities, autism, cerebral palsy, epilepsy and other closely related conditions. To benefit from the center's services, consumers must have developed the disability before age 18.

Funding for the Regional Center of Orange County comes from the California General Fund and the state and federal Medicaid program. For the fiscal year 2012-2013:

17,142: Individuals served by the center.

$276.5 million: Total budget.

384: Number of staff.

2,337: Service providers.

$246 million: Funding to providers.

75: Percentage of center's consumers who have intellectual disabilities.

28: Percentage of center's consumers who have autism spectrum disorders.

Nate Tseglin was living in a filthy, locked bedroom that reeked of urine, scratching himself to the point of bleeding, making himself vomit and banging his head on walls in his parents' apartment, police say.

When panic attacks seized him, the 22-year-old Irvine man sometimes kicked, punched and bit – injuring family, caretakers, medical professionals and law enforcement, according to police and public records.

Tseglin has Asperger's syndrome, which is a form of autism, and post-traumatic stress disorder. For years, the U.S.-born man was under the care of his parents, Russian Jewish immigrants Ilya and Riva Tseglin.

Five months ago, local authorities and mental health officials removed Nate Tseglin from the family’s Irvine apartment, committed him to a psychiatric hospital and charged his parents with misdemeanor crimes, saying they neglected him.

Now, the couple is fighting hard to bring Tseglin home, where they say he is much better off. They desperately want him back.

The case is a glimpse into the challenges of caring for more than 17,000 Orange County residents with developmental disabilities such as autism, epilepsy, cerebral palsy and Down syndrome.

The state was paying to have three in-home caretakers on duty all day and all night for Tseglin. That's less expensive than the $345,000 annual average cost to care for a developmentally disabled adult in a psychiatric institution.

The state provides varying levels of support to about 250,000 Californians with developmental disabilities. Most live with family or in other community settings and receive state-funded services coordinated by 21 nonprofit "regional centers."

Voters' approval of the Proposition 30 tax increase Tuesday will protect the $4 billion system, according to Larry Landauer, executive director of the Regional Center of Orange County.

"It's just a big relief for all the people we serve," Landauer said. "It's been almost four years of significant cuts, so it's nice to know we've survived one for a change."

INSTITUTIONALIZED

This isn't the first time the Tseglins have lost their son. When Nate was 17, San Diego officials committed him into Fairview Developmental Center, a state-run psychiatric facility in Costa Mesa. He lived there for more than a year until an Orange County judge ordered his release from "involuntary confinement" on a "writ of habeas corpus" petition.

A San Diego court gave his parents conservatorship over him. But his parents said Nate wasn't the same.

Being taken from his parents at 17, kept away from them for so long and injected with drugs gave him post-traumatic stress disorder and worsened his developmental condition, his parents say.

The only medication he was taking while in his parents' care was an anti-seizure prescription because other psychotropic drugs forced on him in the past made his condition worse, his parents said.

Even with three caretakers on duty all day and night, it is difficult to care for him.

Tseglin, who is fluent in Russian, English and Hebrew, holds a black belt in tae kwon do.

"It has become apparent over the course of the last few years that Nate's condition is worsening, and that his parents do not appear to be able to handle his fragile emotional state," Irvine police Officer J. Sampson wrote in his investigation report in June.

The saga began when the Tseglins lost the services of the company providing Nate Tseglin's 24/7 in-home caretakers. The firm had more than $100,000 in workers' compensation claims in one year resulting from his "outbursts," according to a letter filed in June in an Orange County court.

To satisfy a mandate in their conservatorship agreement, the Tseglins directly hired untrained, inexperienced workers. At least two of them were so shocked and appalled at Nate Tseglin's condition and his living space that they filed complaints with law enforcement and county health officials. That's why police and county health officials conducted a welfare check on him in June and later removed him.

One caretaker told police that he had been "booked" through Orange County Jail, and the conditions there were better than Tseglin's, according to the police report.

In August, the District Attorney filed misdemeanor counts against the Tseglins for "dependent adult abuse or endangerment" because of the conditions in their home and the injuries that Nate Tseglin had inflicted on himself while in their care. The case is still pending.

Tseglin's father says the charges are ludicrous. Under the state's care, he said, Tseglin has been taken to an emergency room four times, including once for a broken finger, once for a knee injury and once for a severe negative reaction to a psychotropic drug that threatened his life. Hospitals won't discuss patient care with the media because of privacy laws, but Tseglin's father provided hospital records showing several visits to the emergency room since June.

Health officials have been critical of the lock on Tseglin's steel door and the fact that his parents have had to physically restrain him.

But the lock was recommended by a mental health professional for safety and, according to his parents, Tseglin wants the door locked because it makes him feel secure and in control.

Also, College Hospital Cerritos, the psychiatric facility caring for Tseglin, has used seclusion, restraints and medication injections in response to two violent outbursts, according to a letter to the court from staff at the Regional Center of Orange County.

When officials took Tseglin in June, a protective order was issued barring his parents from visiting him. In October, the couple's Irvine attorney contested the order, arguing there was no legal justification for it without accusations, evidence or danger of physical violence against Tseglin by his parents. A court terminated the protective order three days later.

DISABLED BUT INDEPENTENT

Nate Tseglin's case is severe, but many people with developmental disabilities function well in society with the help of their parents and nonprofit groups.

Ron Freedman, 62, has lived alone in for 30 years in housing provided by Project Independence. A caretaker checks in on him every day.

He finds it difficult to explain his disability – an intellectual impairment with unknown causes and some symptoms of dwarfism – but he doesn't mind discussing it.

"It doesn't bother me if I can get along with everyone," he said.

His sister visits often with her son and granddaughters. Photos of family line his shelves, and he refers to them often when he speaks. Every weekend, he goes bowling with friends or visits the beach or the movies.

He volunteers with charities and causes and is looking for a job at Disneyland or Souplantation & Sweet Tomatoes to help pay his income-based rent.

FUNDING FREEDOM

Freedman's compact, first-floor apartment with a patio is across the street from Fairview Developmental Center, one of the last state-run mental health facilities in California.

Debra Marsteller, executive director of Project Independence, is not a fan of Fairview.

"As nice as you make it," she said, "it's still prison based on IQ."

Fifty years ago in California, institutions were the only option to care for adults, such as Nate Tseglin, with developmental disabilities. The state had 13 institutions with as many as 13,400 people. Now, only about 1,500 live in the five remaining facilities.

The Lanterman Act of 1969 declared that people with conditions such as Tseglin's, as well as their families, have a right to live like people without disabilities. The new home-care program coordinated by regional centers gained success as a more comfortable, nurturing alternative.

Regional Center of Orange County has a $276 million annual budget to serve 17,142 individuals. The average spent on in-home services is about $15,000 per person per year, Landauer said. Service levels vary. Some just need someone to check in on them once a day or so.

The clients can go to school until age 22. Their families can take advantage of respite services, which allow them to take a night off.

"This is a valued system, and it really doesn't take that much in tax dollars to know we're taking care of close to a quarter million people who are born this way," Landauer said.

COMING HOME

For Nate Tseglin, time will tell whether he spends the next few years with his family or in a mental health facility. His parents have filed a legal challenge to the government's action.

Brea attorney Russell Nowell has argued that Tseglin is not a danger to himself or the community, and not mentally retarded under standards set by California appellate courts.

Tseglin's violent outburst "got much worse in degree" after his previous institutionalization in Fairview, Nowell said.

Some of the filthy conditions that police found in the Tseglins' home were that way because Riva Tseglin had been at work all day, as she and Nate Tseglin's father work as substitute teachers, the petition says.

Tseglin had a richer, fuller life with his parents – including studying the Torah with his father and participating in weekly synagogue services, the petition says. Irvine Rabbi Alter Tenenbaum has written to the court on Nate Tseglin's behalf.

And then there are Tseglin's wishes. Among the exhibits filed in the case, which is still pending, is a handwritten note from him.

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